Children's Brain Tumor Network Collection Protocol

Description

The Children’s Brain Tumor Network Collection (CBTN) Protocol is a collaborative, multi-institutional biobanking research program dedicated to the study of childhood brain tumors. The ultimate goal of the CBTN is to improve outcomes for children with brain tumors by offering freely accessible samples and data to researchers around the world. The CBTN collects and stores specimens from pediatric patients that have abnormal cell growth in their central nervous system, such as brain and spinal cord tumors. Only specimens that are no longer needed for the care of the child are accepted. Samples can include tissue, blood, cerebrospinal fluid, and in very rare cases urine and stool. These specimens will be paired with clinical data that will be collected over time on the patient. These samples and data may be shared with researchers to find better outcomes and treatments and may be used in genetic testing. Samples may be used in growing a cell line, which is a small tumor that may be used in an animal model for research and clinical trials. Biological relatives also have an optional opportunity to participate by providing a blood or a saliva sample, or a cheek swab. Subjects and their families also have the option of receiving results back if they are found to be clinically significant to the care of the patient. Private health information will be protected by an electronic system that acts as a gatekeeper between CHOP and researchers and protects the information that can identify someone. There is no compensation for participation.  

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